Sunday, August 29, 2010

Happy Weekend.

We have been blessed with another very normal weekend and I am once again feeling blessed. Things are definitely becoming to seem more normal to us. Really, it is the most normal things have been since January 2008 when my Mom was diagnosed with her cancer. Since that time we have lived through a two and a half year siege on our family. Definitely good times and bad but really nothing that resembled my life as I knew it before that time. Although I say the word "normal" reality that will never again be the case for us. We will always live in constant fear and to combat against this we also live with constant faith. We pray a lot and we don't take anything for granted. I have a longing in my heart for the days that I did not worry and when daily stresses were now things that I would consider laughable. I have lost the protected innocence with which I once used to go about my day. I still mourn for it. But I cannot dwell on it and I must enjoy the day for what it is RIGHT NOW,

As such, tomorrow starts a new chapter in our lives. My baby girl is starting her school career at Kirkmont Preschool, the same school her brother and sister attended and surrounded by people close to my heart. People that have followed our story everyday since Ally's diagnosis. I have thought about this day for a long time. ON a lot of those cold and boring and dreary winter days, when I just wished for a moment of peace when no one would be crying, asking for something, wanting me to entertain, cook, etc....I would daydream about the day that they were all in school. Even just for a little bit. I had moments by myself in there, sure, but it would always involve me having to arrange a babysitter or someone to watch them a little bit while I ran to the dr, the dentist, whatever. I always had to set it up. And now it is set up for me. Just about two hours. Three times a week. It will go by quickly, but I cannot believe it is actually here. Not to sound ungrateful for my kids or my life or anything like that.......I wouldn't change a second of what I have done for the last NINE years. I will still use my time to work and clean and run errands and all the other obligations out there. NO JERAD I will not be sitting on the couch eating bon bons and reading US Weekly. (just kidding, he wouldn't even care if I did) I am just saying I am very very happy right now. So happy I can barely even talk about it. I can't jinx it. It can't change on me. I have lost my ability to count on anything because nothing is ever guaranteed for us. I guess what I am saying is that I am so torn......

On Friday, we took the sweet girl to preschool for an open house. As soon as I pulled in the parking lot, Carly said "Yay, I am going to school" She is so ready for it and so looking forward to it. I see a lot of other nervous parents out there, but Carly seems like she will just run in and start playing babies and dress up and play dough and never turn back. We will see....

Our normal weekend ended up being super hot. We wanted to do something outside but ended up going to a movie and dinner instead. Someone had given Jerad a gift card to Chili's, so we went there. As soon as we walked in, we saw an old friend who is the hostess there. She was actually the girlfriend of the first person we ever knew to succumb to childhood cancer (brain) Aaron Whitmer. He lost his battle while still in high school. Ironically, she handed us some coloring sheets that the kids could do to raise money for St Judes and childhood cancer. Well sign us up for that! They also are selling those silly bands for the same benefit and they are shaped like chili peppers. I was so happy that a restaurant was working so hard to make a difference for the kids that I had to mention it here. If you can't decide where to go, I vote for Chili's.

Finally, one of our neighbors had a birthday party with a 70's/disco theme. Happy Birthday Jenny! We had a great time and I kinda figured some of you from back in JC would like to see Jerad's we are....

Thanks for following our story and praying for our girl. Her chemo was increased again as her ANC is back up around 4000. This is just a game of numbers...high then low then high. I am praying they can figure out the exact dose for her. I do think her number is artificially high since she just came off the steroids. We will see on Tuesday when we head back for her weekly blood test

Thursday, August 26, 2010


We found out that Dayton Children's has used Ally as their "poster child" for their work with an organization called CureSearch and the Children's Oncology Group. Attached is the ad they are using for the conference in September. We are always proud to see our girl making an impact, especially when it helps, in any way, of finding a cure for childhood cancer.

Her story was also recently featured in the Annual Report for the Community Blood Center. She has been a major user of their blood! I will scan in the report and share it with you all. We love blood donors!

Ally continues to LOVE school. I did get my first call from the school nurse today (a scratch on her wrist) but it was quickly followed up with "Ally does not want to come home..." Yay.

We are praying for normalcy to continue and also praying for all those who have been diagnosed with childhood cancer.

Please mark your calendars: The Light the Night Walk for Leukemia/Lymphoma is again at Fraze Pavilion this year. I would love to have a lot of Ally's Army there walking behind her. This year, she may actually get to walk! They will also be recognizing my Dad for his efforts as Man of the Year. I hope to make a sea of orange shirts like we had last year. I won't even bug you to donate like I did last year (we have tapped out our army) but just walk to show her your support. It is the evening of 9/30. I hope to get her webpage for it up and running this weekend so you can start signing up. Running Ally's Army is really like having another part time job! Whew. But we can do so much good.....

Tuesday, August 24, 2010

First Day of School

Today was the first day of school. It was unbelievable how quickly the summer went by...most of it good and a few long weeks of worry.

On Monday, the day before school was to start, she woke up having terrible back pain. As if on cue, my stomach sank and I got a pit in my stomach. Instead of doing our last minute things, Ally was at the hospital with her Dad getting looked over. Dr Broxson put our mind at ease....the pain had been right where she gets her spinal taps. He thinks the steroids that she was on were causing her bone marrow to over produce causing the pain in her back. We treated her with ibuprofen and a heating pain. She was done with the steroid and the pain started to subside.

Today my Ally girl started third grade. She is on the "big kids" side of the school now. She was super excited to start school, and last night wanted to go to bed so that school would come faster. This was a far cry from where we were other years. Ally was diagnosed towards the end of her first grade year. So that year just came to an abrupt halt. Second grade was a blur. A blur of heavy dose chemotherapies, spinal taps, and working with her tutor. She went to school about half the days (maybe?) but not without a lot of prodding and coercing and calls from the school nurse with Ally crying on the other end of the phone. It was so hard I can hardly describe it. The whole year. Ally will continue her maintenance chemo for all of the third grade and even into the fall of fourth grade. That makes me sick when I think about how long that is. But things seem to be getting off to good start. I almost feel like I can't talk about it for fear of jinxing it. She was super excited as soon as she got home. She told me lots of details about her day and her friends and how she even spent time with a new friend. She sat right down and did her homework (just 20 minutes of reading). She can't wait to go back. Maybe now, I won't dread school days and I might actually sleep at night....and I pray that I continue to see so many smiles on her face. She was as happy as I have seen her in a long time. She was doing something normal, but for her that was fun. We did go to the blood lab after school. Some things never change, but I am not complaining.

Evan started first grade. His first year of going all day. I could sense a bit of nervousness, but Evan is one of those kids who just goes with the flow. I knew he would be alright. His main worries were that he would have to read a book that was too big for him or that his teacher would be mean. Neither of which are the case! He got to eat lunch next to one of his buddies Sam, and had his other buddy on the bus ride with him. He said the day was long (our bus now comes at 6:53 am!) but he too wanted to go back the next day. We have a lot of caring people at Valley Elementary and it really feels like I am leaving him with family.
Bye E!

Carly. Well Carly was a bit lost without her brother and sister. Being the third chilld, she is used to a lot of action. She is not used to just being with me. Most of last year we had Evan and Ally at home too. The day seemed long...I actually had to play with her! Luckily, she starts preschool next week. Her teachers came to the house this morning to do a home visit and meet her. She was all smiles for them...much more talkative than the other two. I told her not to show her teachers her "attitude" and she walked around all day telling me that she was going to listen to her teachers and be a good girl. She will. She is dying to go to school....she will probably run right in and never look back.

Here is Carly girl with her two super sweet teachers, Mrs Johnston and Mrs Brown (one was Evan's and one was Ally and Evan's VBS teacher) They look more like they could be her mother than me!And was okay. Every time the phone rang I still got a bit nauseous. But the school never called. The day seemed exceptionally long...I missed having the other kids to talk to. I will get used to it and it will be fine. Another stage in my life is coming. I have waited for it for a long time, I just never imagined having the bumps in the road like I did.

Tonight I feel very very grateful for this day. It seems like a gift. It seemed like it would never come. And I just pray that the rug does not get pulled back out from under us.....

Sunday, August 22, 2010

Niagara Falls

Maybe now, one week later, I will actually finish the story of our trip. Because the trip was going so well, and because Jerad is Mr Spontaniety, we decided to stay an extra night and go to Niagara Falls. It was only about two hours from where we were staying and we thought it would be a good chance for our kids to see one of the natural wonders of the world. Of course, we hadn't thought to bring our passports, so we had them overnighted up......only to realize that one of the nine passports was expired (my sister's family was also spontaneously going). It was mine! I felt so bad, it had expired May. So we couldn't go onto the Canadian side, but we stayed on the New York side and had a really great visit. We just drove up for the day, and then came home that night to stay in Erie.

Minutes after we arrived, we hopped onto the Maid of the Mist boat ride, put on our rain jackets, and drove right up under the falls. It was amazing. And wet. The falls are absolutely huge and loud and just a marvel to see. So so glad we did it.

They just come roaring over the top right at us.

This is how little the boat looks from the top! But it is a huge boat. I kept thinking about how Jim and Pam from "The Office" got married on the boat.

We took in views of the falls from all different directions. We hiked around a little and even ate lunch at the top of the Horseshoe Falls. Ally did great! I kept giving her the opportunity to sit down and "wait for Daddy to see it" but she always chose to hike along with us. Such a trooper.

I think I mentioned before that we took a lot of pictures. SO SO many more than I actually put on the blog. Sometimes even having passerby people snap a shot for us....this was one of the most beautiful areas and the sun was glistening on the water and I could have sat there for days...hard to see all the beauty here.

I wanted to get a picture of my three kids there, but somebody in our family starting getting a little attitude. I call her "tudy" a lot, because she just gets fussy about silly stuff sometimes. Check out Miss Fusser, she was not having any of it. Enough of the pictures! You can probably tell she has her arms crossed in her trademark "tudiness"

Well I can play that game too. So I said "Fine, I will just get a picture of the other kids with Daddy" And I snapped this shot.

And then I looked out of the lens of my camera and see Miss Tudi over there fussing again. I snapped the picture and I have to say this picture makes me roll with laughter. I can't wait to show off her little attitude at her high school graduation party.

In all seriousness, we had another great day. Even Carly. Another happy memory that I will hold onto for a long time. We could stay no longer because we did have to get home for Ally's monthly chemo in the clinic. So we said Good Bye to Niagara Falls.

And the next morning, back at our hotel, the kids walked hand-in-hand (without me even asking!) for one more trip up the tower to look out over Lake Erie. And then we got in our car and headed back home.

Ally continues to do well. She just finished her fifth day of steroids for the month. She is eating a lot. This month her cravings have included a turkey and colby cheese bagel for breakfast every day, soft pretzels to the tune of three or so a day, and peach/banana smoothies with fresh peaches from her Pa's orchard. A little healthier than our pizza roll days, but still eating a lot.

Over the last few days, she has developed this hypersensitive smell issue. She says she smells flowers and/or soap/fragrance and it really gets to her. Makes her head hurt and makes her a little nauseous. Of course, any little thing like this causes me to worry. Has anyone out there ever heard of this?? Please let me know if you have. I tried to research it some but came up with nothing.

Tomorrow is the last day of summer. Wow. Back to school on Tuesday. More blogging on that later.

Thursday, August 19, 2010

Erie Trip, the middle

Well I think I made it clear that the Barnetts like to cram a lot of stuff into each and every day. I failed to mention that we also photograph almost every single moment, maybe almost to the extreme. So in efforts of keeping the family room slideshow going, I have attached a lot of pictures from our trip. There is so much to remember, and I want to make a book of this blog someday, so I am posting them out here.

I am not sure how we got to be so lucky, but pretty much everything went our way during the trip. It just seemed like everything was going our way. (FOR ONCE) Need a parking spot, oh yea, here is the first spot. Looking for something, here it is. Little things, but they all just seemed to add up to make it a very great trip.

What I think it really was....was that we were finally free. Free to do as we wish. Not bogged down by appointments and medicines and hospital stays. More importantly, we had a girl with us that actually wanted to do things....more more more...she always wanted more. Such a far cry from the whole last year. I think when our lives were taken away from us for a while, we suffered. So then when the life reappears, it is just that much sweeter. Every little thing is special.

That being said...I will let my pictures tell more of our vacation story.

We started at beach #6 on Lake Erie (thanks Julie)...there is a peninsula that juts out into the lake. The kids LOVED the beach. I asked them when we got home what their favorite part of the whole trip was, and it was the beach. The free thing! The thing we did quickly before going to the amusement park. But to them, it was just like the ocean, and a luxury that we don't really have here in Ohio.

Then we went to this amusement park called Waldameer where you can actually pay by the ride! The park is free, but you just pay to ride things. Quite a novel idea. This was good for us because we only had a couple hours anyway. It is really an old school amusement park. Real cotton candy and candy apples being made right there! It was so sweet to see my kids on the exact same rides that I did as a kid. I have pictures of me doing these same rides.
She loves her big brother, check out that hand around him.
I have to the find the picture of me on this plane...Then all five of us got on this giant gondola style ferris wheel. It was super fun to all be in the same car. And then we got stuck on the top while they reloaded, but the view of the lake was phenomenal. See it there?
We were high! You can see the lake in the background....
After the park, we went to Grandma and Grandpa's house for a picnic. We always sit in the backyard at their house. They have huge trees and lots of shade and a huge yard for the kids to run around in. Here are my kiddlings with their Great Grandma Josie

And this is my Aunt Gail with Ally by my Grandma's bird bath. Birds run in the family around here. My Aunt worked her fingers to the bone arranging the picnic. (thank you)
And this is Uncle Bill helping the kids pick apples off the tree...
They had a great game of tball going, with a few of the neighbor kids, and Grandpa Jerry sat and watched with a big smile on his face. I could tell he loved watching the kids run around his yard.
And we got to celebrate Evan's birthday with presents and cake!
And I need to mention once again how cute my Grandpa Jerry and Carly are together!
Here I was trying to get just the shadows of my kids...easy to tell who is who...I need some photography classes though, not perfect.
The sun setting over the bay.

And back to our hotel on the bay to sleep....
So lucky we are to have had this day. One I will not soon forget....

Tuesday, August 17, 2010

Erie trip, the beginning....

After 15 months of remaining in the Dayton area bubble, the Barnett family broke free and crossed the state line into my home state of Pennsylvania. After receiving counseling by our sweet clinic nurse Cheryl, who convinced me to go, we headed out on our five hour trek on Thursday afternoon. Ally had been wanting to go.....but I would never commit to the kids due to the possibility of not going. She knew I had received the call, so in her little voice she said "can we go Mom?" To which I finally, with a small hesitation in my voice, said YES. YES we are going.

The primary purpose was to go see my grandparents....who are amazingly 91 and 93 and living on their own in Erie Pennsylvania. My grandma had not seen Ally or Jerad in two years! We couldn't travel and she has not been well enough to travel either...even staying home for my Mom's funeral (her daughter) last March. It was a sweet reunion and one I had been waiting a long time for, not sure it would ever even happen. But it did and I thanked God for that repeatedly. We also got to see my Mom's sister Gail and her brother Doug. A family reunion of sorts, because my sister Melissa and her family also went. Unfortunately, it was glaringly evident that we were missing one very important person, my Mom. But Mom would want us to stick together and we have and we will. I love to look into the eyes of her family, because for one small moment I can feel like I am looking at my Mom. They are my connection to her. In the past, I would frequently tune out stories of a young I revel in the stories....always wanting to learn one more thing about my amazing mother. The stories become treasures to me and the questions I have get answered. And being in the house she grew up in, well it is very hard for me. I can merely choke back the tears, but somehow it also makes me feel a tiny bit closer to her.
Ally showed Grandma the "beads of courage" that she has earned...four necklaces worth
The whole city has reminders for me, because even though I moved to Ohio when I was about Evan's age, we have gone back there nearly every summer since. And although some people would laugh when I say we "vacationed" in Erie, you really can't beat it. Especially this time of year when the cool breezes off of Lake Erie make August that much more bearable. We stayed in a pretty new hotel right on the bay front, with two queen beds and a water view. Every day we ate breakfast on the veranda with the lake just feet away from us, the kids indulging in fancy hot chocolate in their own stainless steel pots. They thought this was pretty cool.
And each day as we left the hotel, I could look across the street and see the actual hospital where little Janel Mills was born. I guess I was right back to my roots down to the very street! And did you know that my second house in Erie was on Allison Avenue? Wow, that is kinda weird now that I think about it.
The hospital where I was born, because I know it is riveting to see...
As the Barnett family was so used to doing, pre leukemia, we crammed as many things into each day as humanly possible. This is more a Jerad trait, than a Janel trait, but I go along with his plans most of the time which is why we are a good couple. The first day, after visiting with the family, we went to the Erie Zoo. It is the perfect sized zoo and can be done in just a few hours. Unbelievably, my 93 year old grandpa INSISTED on going with us. And yes he walked up and down most of the hills checking out the bears and tigers, and then made a very sweet memory for me by riding on the train with my three year old daughter. There they were, riding the old red train at the Erie Zoo...he had his arm around her and there were 90 years between them. Carly and her great Grandpa Jerry. He loves to make cracks about how he made it to 93 by eating beef and ice cream and drinking whiskey. Whatever it takes, man, I tell him. I think he made it so far because he has always been so active. The man is still known to cut his own grass. Oh and he does laundry, cooking, and shopping too. If you can't tell, I love my Grandpa Jerry.
Seriously. How cute. How adorable.
I should also mention that he was one of the original founders of the Erie Zoo. His name is on this sign as you enter the zoo....had to get a pic.
With all five of his great grandchildren....
Right after we left the zoo, we were driving down the road and I saw the most appropriate sign outside a school. It said:
We don't stop playing because we grow old. We grow old because we stop playing.

If only we could all be so wise.

And on that note, being that it is 12:45 am and school starts in less than a week, I best get myself in bed. I will continue with our lovely trip another day. I am sure you will all be waiting on the edge of your seats. I feel like I am giving a slideshow in my family room or something and all my readers are rolling their eyes. Hah! But that is what the blog is for, writing down the memories.

We are back.

I am sorry for my lack of updating. We were visiting family in Erie PA! A huge deal for us to be able to leave our 1 hr radius that we have been confined to for the last 15 months. The trip was just amazing for everyone...we had a fantastic time. Family first, but we also did zoo, amusement park, Beach, putt putt, and a last minute trip to Niagara Falls. Today we are at hospital for chemo day. Good news ...ANC back to 1180. Chemo resumes again today after a three week hiatus. More later with pictures!

Wednesday, August 11, 2010

The count is in

The number is in. Her ANC is STILL 270. Very low. However, all of her other counts did improve. They told me that her bone marrow is now showing signs of recovery, whereas before it really wasn't. Her Hemoglobin, White Blood Cells, Platelets, and Monocytes have all risen quite nicely. The best news...her liver is completely back to normal now with AST/ALT levels at 29 and 32. If you saw her, you would know that she is recovered. She is swimming and active and talkative and everything I want my child to be. She says she is ready for school (with a smile) and, oh yea, can I please sign her up for swim team and piano lessons too. How could I ever say NO?

Our clinic nurse told me today: we encourage you to live as normal of a life as possible.

We are trying.

Her chemo is still held. She hasn't had chemo at all since something like July 29. She goes back in for monthly chemo infusion on Tuesday, so they will reassess her at that time. She will have gone almost a full month without chemo by that point. Scary, but true. Obviously, she could not handle the doses of chemo they were giving her and the doctor will have to revisit that. This was expected and I can count three other kids that I know that basically just did the same thing.

For now, until Tuesday, we are going to enjoy a few more chemo free days. We feel very blessed that our daughter continues to show her old self. We love rubbing her new hair. We are mindful of how our lives have changed, and quite honestly will never go back to how it used to be. But we are adjusting to living life as normally as we can considering the situation.

Thursday, August 5, 2010

Hello August

Hello August. I can't believe you are here. I am attempting to hold onto summer with a tight grip. So many things left to do, so little time. We have our "summer bucket list" and definitely still have some open items. We got waylaid by Ally's approximately one month illness, but we are trying to make up for lost time here lately.

Although Ally's counts are low, she continues to have boundless energy. She will get her counts done again on Wednesday and I am just praying that she makes some progress. If she doesn't, then I will start to worry and our plans to see my grandparents will be screwed up again. I don't believe they have seen Ally for two years (summer of '08) which was the last time they were here.

When I say she has a lot of energy I mean this:
She asks to go for a bike ride at 10am (some of us may still be in our jammies)
When everyone clears out of the pool to leave, she is still in there....doing laps. Butterfly, breaststroke, swimmer.
Speaking of swimming, today she did multiple swim relays with her friends. She did great and really wants to join the swim team.
She flies outside right after dinner...looking for something to do. A game of PIG basketball?
Fishing with her cousins until dark
And enjoying many rides at the Greene County Fair (photos courtesy of Nicki since I left my camera at home!)

Carly and Sam in third car.....
Yesterday, we also had a huge birthday pool party for our summer birthday children...a combined Hello Kitty (Carly) and Lego Batman (Evan) party. I will have to share pictures of that next time.
We have been a little busy around here. Which is very very good.
For now, I am hoping those counts rise up. I am hoping she continues to feel good and laugh and have fun like an 8 year old child should. I am putting all thoughts of school/school supplies, etc out of my head....just for a little bit longer...and holding onto these last lazy days of summer. Enjoy the heat.